Every Vote Counts

The John Tracy Clinic is amazing: they offer amazing services to families of deaf and hard of hearing children for no charge. When we attended JTC this summer, we heard Nolan whisper for the first time, received recommendations for a personal FM system, and finally received information to nail down Nolan's hearing loss type and levels. Without John Tracy, we would still be wondering if Nolan had a progressive hearing loss, we would not have the FM system, and we would not have been as empowered.

Unfortunately, the Clinic struggles for funding and relies on generous donations from the community.

Please vote for John Tracy in the Pepsi Refresh challenge: imagine what they could do with $250,000! Every child deserves a voice.

http://www.refresheverything.com/jtc

July 2010

About two weeks ago, I submitted our application to the John Tracy Clinic International Summer Session. Last night, I received the email stating Nolan has been accepted for the July 11-30 session in Los Angeles, California.

The John Tracy Clinic has been a tremendous source of support, encouragement, and education for our family- from the early days when we were struggling to know what Nolan's level of hearing loss "meant" to these beginning preschool years, when we are struggling with discipline, learning special education laws, and other things that come with having a hard of hearing two year old.

For those who are not aware of the John Tracy Clinic, it provides free resources for the parents of deaf and hard of hearing children. They have a correspondence course for babies, and another for preschoolers. If you have a baby or young child recently diagnosed with hearing loss, I highly recommend their program.

The summer session includes audiology services, various language assessment tests, a preschool program for the children, and classes on everything from speech development to ear anatomy for the parents. Marielle, Logan, Tayten, and Miss Kat have been through the John Tracy Summer Course, and have excellent write-ups about the experience.

We will be staying in the on-campus apartments at USC, and will walk to and from John Tracy. Since we have family in Southern California, the grandparents have quite nicely decided to take care of Matthew while Nolan and I are at school. Matt is in for the time of his life, with trips to Disneyland, the Sequoias, and other trips in the planning stage. Nolan and I won't be left out of the fun, as a trip to San Diego and a few other mini-trips are in the planning stages for the weekends.

I am also thrilled that Lucas and Noah will be attending the same summer session program. I can't wait for July to come so that we can hop on that plane and start our learning adventure!

First Graduation

Nolan has completed the Baby Course of the John Tracy Clinic International Correspondence Course. Congratulations, little guy!

John Tracy Clinic

I haven't written a post about this yet, so I will now. I contacted the John Tracy Clinic shortly after we received Nolan's diagnosis (via their online sign-up for the baby correspondence course). Sometimes I feel a little sad, because we used to live in Oxnard- a stone's throw from LA and JTC! The correspondence course is great, though.

A week and a half ago I received a letter explaining the baby course and assigning Nolan a case number. We received the first part of the baby course less than a week ago. It came in a big manilla envelope stamped with "Book/Video for the Deaf" on it, which was a strange moment for me. While Nolan isn't profoundly deaf, his hearing loss is permanent and seeing this drove home that point for me. I was excited to receive the materials and immediately took out the booklet for lesson 1. There was a lot of interesting material there, and the book was broken up into sections. They have games to play with the baby to help with communication, normal developmental milestones, etc.

There is also a parent report to fill out at the end of the course, which I'm supposed to mail back in a month. Lesson 2 is already in the mail, but lesson 3 won't be sent until the report from lesson 1 is submitted. Since Early Intervention hasn't started yet, I've been using the JTC materials to work with Nolan. I've been keeping a report in a word document to send along with the parent report. So far, here is what I have written for Nolan's responses to the curriculum:

Date: November 8, 2007. Packet received today. Nolan is 10 weeks old.

Games Played: Quiet Time, Patty Cake.

Notes: Nolan smiles and coos. Sometimes it is hard to get him to make eye contact when talking, but once eye contact is made he reacts by smiling. He loves “Patty Cake” when I move his arms through the clapping/patting movements. He always smiles at the end when I move his arms like they’re clapping and say “Yay!”

Early Intervention set-up meeting was today. The wrap-up meeting will be December 6, when our IFSP is put together. The date for evaluation is pending, but will be completed before December 6.

November 9: Went to a mother’s group meeting at a local church. Nolan became extremely fussy and I could not calm him. I took him outside of the room and there was a loud rock band playing in the sanctuary. Nolan quit crying and was quite happy- as long as I stayed close to the sanctuary and he could hear the music. I didn’t go inside because I didn’t want the loudness to hurt his remaining hearing, but the beat carried well to the outside hallway.

November 9-11:

Nolan has a cold. He is rather cranky but still lights up when I smile and sing to him. I usually have him on a Boppy pillow when I read to my older son so that he is close enough to hear the words.

November 12:

Nolan squealed and smiled today- not a “belly laugh” yet but as close to laughter as a 2 month old can get! He is 11 weeks old. We played “Motor Boat Motor Boat go so slow..” with his legs. He liked this activity.

Cool Coincidence

I went to church today and was talking to a few people who knew about Nolan's failed hearing screen. During the service, there was an announcement that the former nursery worker was "retiring" so that she could attend the services. I wondered who the new nursery worker was going to be. I don't leave Nolan there, but Matthew can't sit through an hour and a half long service. With Nolan's future hearing aids, I don't think I could ever leave him there (the thought of a lost EXPENSIVE hearing aid alone makes me queasy).

I noticed a new little boy sitting up front with a cochlear implant (CI). I turned to my friend and asked her, 'Hey- who's his mom?" She told me his mom was the new nursery worker. COOL! If I ever need to put Nolan in the nursery, I have the confidence of knowing that she understands the needs of deaf and hard of hearing kids. Plus, she knows about expensive equipment! It was also interesting during a moment of silent prayer- her little boy piped up with, "it's so quiet in here!" It was kind of amazing that a deaf child could remark on how quiet the sanctuary was!

The lady in front of me overheard my conversation with my friend regarding the results of Nolan's hearing test. Turns out she's an ASL translator (she has a deaf sister and translates for the local school district). She offered ASL information and instruction. Yay! We live in a little town, so I wasn't sure how I was going to get in contact with someone who knew ASL (if we use that as part of our communication strategy). I'm a bit lost in all the turmoil that surrounds the diagnosis of prelingual hearing loss. There are a lot of decisions to be made, and communication options must be decided early on in the game. I do know I want to use some sign language at the very least, since Nolan could lose more hearing in the future (always a possibility). Plus, he can't wear his hearing aids in the bath, at the beach, etc. His ability to hear (even with aids) will be compromised in situations with a lot of background noise. Communication options, however, are something that we haven't had enough time to go over very carefully at the present time. Once I get in contact with Early Intervention, I am sure things will crystalize and we can begin moving along.

I did contact John Tracy to get their correspondence course (free to parents of deaf and hoh kids). I am SO glad the organization exists. I am also glad to live in a time where internet capabilities allow for the free exchange of information.